Dementia makes communication difficult, but some steps can make it easier

Brian Cronin for The Washington Post - In dealing with a person suffering from dementia, communication can be difficult but some steps can make it easier.

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My grandmother, who is 92, recently reported that she’d seen three giraffes in her Midwest back yard. She is otherwise sharp (and also kind and funny), but the giraffe episode was further evidence of the mild cognitive impairment that has been slowly creeping into her life.

The question for my family has become: How should we respond? One of my sisters tried humor. (“Grandmom, I didn’t know you drank in the middle of the day!”) My father suggested that they were deer (to which she replied, “I’m 92 years old, and I know a giraffe when I see one.”) I tried to learn more about what, exactly, the giraffes were doing out there. (She didn’t seem to know, saying only that “the light shimmered.”)

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Communicating with a family member who has cognitive impairment can be frustrating and disheartening, even downright depressing for patient and caregiver alike. And it’s a problem faced by a growing number of Americans. According to a report published last week, about 4.1 million Americans have dementia. Alzheimer’s, one of the many forms of dementia, is the most expensive disease in the United States, costing $157 billion to $215 billion a year — more than heart disease and cancer, according to the study, which was sponsored by the National Institute on Aging. As baby boomers reach old age, these numbers are expected to increase dramatically.

A number of techniques can not only reduce the frustration but also create new ways of connecting. Among the most effective and popular among experts is the “validation method,” a practice pioneered by geriatric social worker and researcher Naomi Feil in the 1980s.

As its name suggests, the practice is based on the idea of validating a patient’s experience — to empathize, even if what the person is expressing doesn’t seem to make sense.

In my grandmother’s case, that might have been to ask how tall the giraffes were or how my grandmother felt upon seeing them.

“You match her emotions,” Feil says. You communicate that you “know that it’s real and meaningful for her, [that] she’s not psychotic or hallucinating.”

Feil, the daughter of a nursing home director and a social worker, studied psychiatric group work at Columbia University, then came home to work in her father’s facility in Ohio. There, her family established units for people experiencing memory loss. Today, Feil’s method is used around the world.

“Validation was one of the first approaches,” says Mary A. Corcoran, an associate dean at George Washington University School of Medicine and Health Sciences. There have been many since, she adds, but “validation is one of the better known approaches to addressing the emotional needs of people with Alzheimer’s disease.” Clinical study results on its effectiveness have been inconclusive, she says, but the technique has nonetheless become widely used. Alice Bonner, director of the Division of Nursing Homes at the Centers for Medicare and Medicaid Services, says that validation “was the foundation for our teaching about person-centered, individualized care over the past year.” It is also the basis for a series of six training DVDs for health-care workers that CMS developed and distributed to each of the nation’s more than 15,000 nursing homes.

Sunrise Senior Living, which manages 300 communities nationwide, including more than a dozen in the Washington area, uses many of Feil’s validation strategies in its “Reminiscence” memory care units.

Rita Altman, a vice president of the McLean-based company, describes a recent interaction with a Sunrise resident: A woman with advanced dementia was sitting alone, rocking her hands as if caressing a baby. Altman asked the woman if she loved to hold her baby. The woman, who was no longer able to communicate in full sentences, looked her in the eye and said yes. Altman set a doll in the resident’s arms as if it were her baby, and together they hummed a lullaby.

“By providing the resident with the doll and acknowledging how much she loved to take care of babies, I validated her feelings and helped to fulfill her basic human need to express love, and nurture or care for a child,” Altman explained in an e-mail. “We know that deep down she knows it is a doll and that providing a doll is never enough. We also need to make that human connection. By using empathy along with some validation techniques, we can provide meaning and purpose to residents, even those in the later stages of memory loss.”

Using validation at home

Strategies for talking to people with dementia are not so different from effective listening techniques. Jo McCord, a family consultant for the Family Caregiver Alliance in San Francisco, suggests imagining yourself in your loved one’s position.

“Arguing with them is very damaging to their self-esteem,” she says. “Depending on where someone is in the disease, use a different vocabulary. Adapt your behavior to accommodate theirs.”

Families hoping to maintain or improve communication with those who have cognitive problems can use principles of the validation method on their own, Feil says. These approaches can help with issues related to repetitive statements or questions, angry outbursts, false accusations or the longing to go home. In each instance, Feil advises family members to “center,” by focusing on their breathing. Breathe in through the nose, she says, count to eight, and then exhale. Repeat this six times. It’s a different take on the adage about counting to 10.

In the case of the patient who repeatedly asks a question, Feil suggests you first “imagine the opposite.” If the patient keeps asking what time you’ll leave, for instance, ask, “What will happen if we don’t? Are you worried? Do you think we’ll be late?”

Corcoran of GWU recommends avoiding questions that might make the patient sense that she has to justify her feelings. Corcoran recommends a slightly different approach, such as saying, “I know you don’t want to be late, and I don’t, either. I’ll make sure we leave on time.”

Feil suggests using “polarity”— ask “What would be the worst thing that could happen?” In listening to the response, recognize that you are looking for what’s behind the answer: What is causing the anxiety? What are the underlying concerns? Once you understand what the worries are, you can try to ease or dispel them.

Take a minute and move

If you are feeling frustrated with your loved one, take a minute, Feil says, and move. Just go up and down the stairs (if you can), or do something else physical to release your own tension.

In addition, she recommends finding someone to talk to, perhaps by joining an Alzheimer’s support group. Not talking about what is happening, Feil says, can lead caregivers to “blow up and not be able to use any of these techniques.”

Patients with dementia can sometimes experience angry outbursts. Center yourself, Feil suggests, and then look closely at the person: Observe her eyes, her facial muscles, anything to distract you from your own reaction. Then try to rephrase what the person has said. “Pick up their emotion,” Feil says. “Reflect it. Then you have some communication.”

Caregivers can be hurt and confused by accusations that they have stolen or hidden a patient’s belongings. Often, these items symbolize some other aspect of the person’s life. Feil suggests that in these cases, patients are really saying, “ ‘I’ve lost my youth, my husband, my money, my power, my control.’ It’s a coping method, blaming others.”

Feil says the temptation is great to say anything just to get the person to stop, but doing so can be patronizing and at some level the patient will understand that this is what is happening.

Instead, Feil recommends listening and allowing emotions to be expressed. Try reminiscing about the object, the time or place or people it represented.

Finally, if you are at a loss trying to respond to a patient who simply wants to “go home,” ask specific questions. “Where would you like to go?” Feil suggests. “Who do you want to see the most? What would you do first?” If they are disoriented about a long-dead loved one, ask “When did you last see him? What did he say to you? Talk about that person and reminisce.”

In advanced stages of the disease, when people have lost their ability to communicate, Feil urges families to turn to music and touch. It’s unclear why or how this helps, except that music and touch connect to our most basic instincts.

Lisa Snyder, a social worker at the Shiley-Marcos Alzheimer’s Disease Research Center at the University of California at San Diego and the author of “Living Your Best with Early-Stage Alzheimer’s”, also urges caregivers to acknowledge the power of nonverbal signals.

“Sometimes, as cognitive thinking abilities become comprised, the person becomes more attuned to body language, and picks up on stress or irritation,” she says. “They can read our body language. The person is looking for cues, and you have to attend to that.” Watch what you might be expressing, and do your best not to project negativity.

“It’s so important to know that [people with dementia] aren’t infants, they’re not their disease. They are people with needs, and you can communicate with them. You need to go where they are; they won’t come to you. Their world makes sense to them, and they often are very creative. The idea in validation is to keep communicating with the person, wherever they are.”

As for myself, I call my grandmother a few times a week, and simply follow the flow of her conversation. We reminisce about shared experiences and sometimes talk about what we mean to each other. When the giraffe issue comes up, as it sometimes still does, I say, “I am sure you saw something.”

Lynch Schuster is the senior writer for the Altarum Institute Center for Elder Care and Advanced Illness in Washington and an author of “Handbook for Mortals: Guidance for People Facing Serious Illness.”

 
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